The scientific race toward “precision medicine” is shifting the ethical foundations of public health.
Patricia J. Williams April 3, 2015
For those unaware of how much biotechnology is changing the very nature of human identity, now is the time for a quick game of catch-up. A good place to start might be Bregtke van der Haak’s documentary film, “DNA Dreams,” at https://vimeo.com/58285542. ; It’s about the material resources being expended, globally, upon utopian visions of “curing” just about every social misery through genetic manipulation. Disease, hunger, stupidity, will be edited out of the genome according to the soaring ambition of some techno-ideologues; whilst harmony, musicality and soaring intellectualism will become the new norm, just by transplanting our mitochondria, editing our nuclei, enhancing our chemistry. The visuals of the film alone speak volumes: set mainly against the dystopic, concrete jungle that is Beijing, China, the landscape in and out of the lab is grey with bureaucratic heaviness and the ash of atmospheric pollution, testament to the anthropocene era’s other crises of ecological short-sightedness, of hubris, and of overweening human error.
Of course if you believe that complex traits like intelligence or sociality or political disposition are entirely reducible to immutable genetic functions of memory and executive function, I won’t be able to dissuade you here. So go ahead, find the golden “genetic button” for x, y, or z trait and flip that switch to perfect health, self-control and immortality. Welcome to Oz.
But if you worry that epigenetics factors like education or diet or or stress or starvation or race or stress in the womb or other environmental factors—like kindness or cruelty–have at least equal claim upon our life prospects, then take a look at a few recent bioethical happenings begging for our collective attention. The first is the National Institutes of Health’s “precision medicine” initiative “to leverage genomics, informatics, and health information technology to accelerate biomedical discoveries.” The panel overseeing the project include not only academic researchers but representatives of insurance companies, corporations like Intel and Google, the Defense Department, and a healthy array of venture investment. The goal is to create a “national research cohort of about 1 million people, whose biological data, as well as environmental, lifestyle and behavioral information” is to be shared with researchers.
One obvious question is where they find a million samples. Most of those will come from the data of anyone who’s ever sent in a spit sample to direct-to-consumer kits or ancestry-tracking kits to companies like 23andMe, particularly those who’ve participated in the chat-room conversations hosted by such companies in order to mine your lifestyle choices. If so, you agreed to having your data used for research and development, whether you remember providing specific consent or not. Not that anyone reads the intricate online terms of service for much of anything anymore, but building data sets for experimentation and pharmaceutical development has always been the wealth generator for such companies. (Here’s the link to an earlier column I did on this topic: http://www.thenation.com/article/168261/how-our-genetic-maps-are-being-sold-highest-bidder#; and to another in Genewatch magazine, co-authored with Columbia University biologist Robert Pollack: http://www.councilforresponsiblegenetics.org/GeneWatch/GeneWatchPage.aspx?pageId=529 .)
A recent, even more momentous technological development is CRISPR(Cas9), standing for “clustered regularly interspaced short palindromic repeats,” a technology that can delete as well as add heritable genetic variants. Worried about Alzheimer’s? Breast cancer? Parkinson’s? Simply edit it out of your body and/or that of your children’s children. Don’t like red hair? Short stature? Big nose? Ditto. Want strong bones? Resistance to heart disease? Oh snap. The process is so simple and low-cost, that, according to Harvard geneticist George Church, it’s “going to get to the point where it’s like you are doing the equivalent of cosmetic surgery.” 
There has been little political attention to this. But within the last few weeks, there have been calls from an impressive array of scientists—including even Church and a number of those involved in the discovery of CRISPR, in both Nature and Science Magazines for a moratorium on its use in humans. Some of them have called only for a public conversation; others have called for a global ban, because it effectively allows non-consensual experimentation on future human generations. But many more see it as an irrefutably good thing. Says bioethicist John Harris, of Manchester University in the UK, “The human genome is not perfect…It’s ethically imperative to positively support this technology.” While much of the quest for so-called “precision medicine” is being framed as inevitably beneficial, it signals a shift in ethical guidelines that is breathtakingly broad. As philosopher Nikolas Rose has observed, the very project of medicine seem to have shifted from a metric of health versus disease to one of ever-expanding “perfectibility” of the species itself.
A related concern is that that public health organizations like the NIH, the FDA and the FTC seem increasingly aligned with organizations whose ethics are driven by proprietary interests rather than public health. The structure of labs in today’s world means that individual researchers stand to make billions, through assays and patents. This is not to blame scientists: that’s their job, their passion, as well as their profit. They will of course adhere to a model that renders “science” their god, and the mysteries of its unraveling as the highest good. Knowledge will be pure and will yearn to be “free” as well as “freed.” Nothing will go wrong because their intentions are pure. Don’t you want to cure all human disease! We are not Nazis! We’ll be careful!
But the trouble with profit motive as an ethical framework for human health and heredity is that it deploys a risk-benefit analysis. It directs our gaze to the brand new! miraculous! happy making! potential of product rather than patient. Corporations are responsible to their stakeholders not to public interest. And if there are risks, they will be downplayed as the lessons of lead or tobacco or coal companies should have taught us. Negative or unintended consequences are more likely to be passed over. And even where there are “miracle cures,” the benefits of that research will not necessarily be available without price. Where there is no plan for distributed benefit, we will have what we have: a system where “perfected” or socially preferred traits will be available only to the highest bidder—to narrow classes of stakeholder, defined by wealth or other privileged access.
The narrowing of ethical concern from human health to products that “fix” or “perfect” means that other aspects of market value drive the pursuit. What’s going on now is also a rat race to “beat out” others in the charge to the patent office, a lunge to own all parts of the genome, to close down the public commons in the bio-territory of the genome. Hence, much of this has an urgency to its framing that exploits our anxiety about mortality itself. Hurry up or you’ll die of an ugly disease! And do it so that “we” win the race—for everything’s a race. A race against time. A race to file patents. A race to market. A race to better babies, better boobs. There is never enough glory or gain, there is always the moving goal post.
Let me be clear: I am not against research in principle. I do not even believe that there are necessarily clear boundaries between what we call “natural” artifice, or even human and non-human. But the human body is a complex system, a biome within biomes. We are at the very beginning of our appreciation of its genetic as well as cellular, bacterial and viral complexity. We are still only beginning to understand the cascading effect that the stresses, starvations or traumas of one generation can transmit epigenetically to future generations.
From thalidomide to global warming, short-term risk-benefit analyses rather than long-term disinterested methodologies and controlled study have led us down paths of irretrievable harm. What we have failed to imagine becomes “inconsequential,” swept under the rug as “side” effects, collateral damage, lessons learned rather than lives ruined. The post-war aversion to eugenics–that despite great variability from one human to another, no one life is worth more than another in the scheme of things–has eroded. Never have we more needed thoughtful, unrushed and thoroughly democratic models of transparency, public discussion, and distributive justice.
 “Engineering the Perfect Baby,” MIT Technology Review, March 5, 2015.